Childhood epilepsy

[megmums]

DS was diagnosed with childhood epilepsy with Centro temporal spikes when he was 9. It’s been controlled by Epilim for 2 and a half years. Doctor said once 2 years seizure free could start to wean off medication but also said he will likely outgrow epilepsy by puberty. He’s not showing any signs of puberty yet so am reluctant to wean off the meds. Has anyone had experience of successfully weaning their child off epilepsy medication? Also did they find that the meds impacted language cognition and memory? Did these improve when meds stopped?

My son has epilepsy but his case is different as he has a genetic condition and other complex needs. He weaned off Epilim two years ago after taking it for several years. The first step in weaning was to stop increasing the dose based on his weight which I found reassuring. After some time we began to decrease the dose slowly until it was eventually stopped. It does feel scary to wean off an anti epileptic but it was done so slowly and he was absolutely fine.

There is huge variation between epilepsy types in this respect so limited read-across from other people with different types - however this is one of the epilepsy syndromes with the best odds.

DD had Brects too. You are the first we've come across. She tapered off her medication from 9 and was off it by 10. No seizures since and declared epilepsy free before she left school, so can now dive/drive/climb without any problem. Her medication had a different name, but I can't remember it now.

I remember being terrified when she was first diagnosed, but it was all fine in the end.

Thank you everyone for your replies. I understand that this type of epilepsy syndrome means my son is highly likely to outgrow it. But that doesn’t take away the anxiety! Good to hear positive stories about weaning off medication as I know that is the best thing for him long term.